Embers

There is an insidious hiding evil about “surviving” cancer (I’m still hesitant to call myself a survivor – I’m alive and in remission…but I still have 4 years and 3 months to go before I get to call myself cured). Leukemia and other blood cancers tend to be particularly prone to this evil (especially post transplant), but other cancer survivors I’ve talked to deal with the same bit. We’ll get to that in a bit. First, let’s get specific, and talk about what I mean when I talk about my case specifically.

I spent an unknown amount of time pre-diagnosis feeling just generally pretty shitty. I wasn’t sleeping well. My training was a constant struggle. I was light headed whenever I stood up. My trainer at several points asked me what was the matter with me, and more than once told me I looked grey or green. As far as AML goes, I was lucky. None of my organs had any damage done to them before my disease was caught. However, my hemoglobin was so low that doctors expressed doubt and shock at my activity level. As in, they were shocked I made it into their offices without wheelchairs and someone pushing me.

Then came diagnosis. With it, came the multiple stages of grief, namely, a big fat heaping of denial.

Though, to be fair, I think I dealt with this stage pretty quickly…slash…not at all. In that, I very quickly got adjusted to my new reality, and settled down to get this handled and taken care of. And at the same time, to this day, I still kind of shake my head at wonder. 14 months have gone by and I still don’t think of myself as having been a cancer patient. Go figure.

Next up was relief. A ton of relief. I was so thankful that not only they figured out what I had, that I live in 2013, in America, near NYC. I live in one of the 3 best (3rd best, in this case, but I think it’s close enough) areas of the world to get Leukemia. I was treated by some of the top doctors and staff in the world. And they figured out what I had and how to treat me in a whopping 4 days. Admitted on a Monday, chemo started Thursday.

Now for the next bit is the odd bit.

Mentally, you are prepared and ready for chemo to be awful. Honestly, my induction and subsequent consolidation treatments weren’t that bad. Now, don’t take that the wrong way. I would not voluntarily go through it again, nor would I wish that experience on even my worst enemy. But in terms of my mental image of how things would go versus how things actually went, I was pleasantly surprised. We’ll get back to this point.

When I was diagnosed, I was told just how long of a process this might be. The chemo-only route can take 6-8 months from diagnosis to recovery, or more, depending on how you tolerate the chemo. I was 4 months in and had 2 more potential chemo treatments, and I was on the low end of recovery times and complications. Stem cell takes 6+ months to recover from (I was told ~4 months). I can say now that I was not prepared for 14 months.

The transplant, though…well. I can’t say that I was prepared for how much it was going to suck. I can’t pretend that I got through that process with grace and charm. The 48 days I spent in the hospital post-transplant are, to-date, the most unpleasant days of my entire 28 years of existence. Everything about it was just the worst. I lack the vocabulary to properly explain it. And believe me, I have never been described as “the quiet type” or really, anything but verbose.

However – I was mentally ready for awful. I might not have been ready for how awful. But I was ready. I was game. I signed up willingly. I went in with eyes wide open.

What I absolutely wasn’t ready for was the recovery. Not just how difficult it would be, because I knew I would have to struggle. But just how long it would be. This is the insidious evil. This is what all of us that have dealt with cancer learn. Even when you start to look better, and have more good days than bad, it’s not over. It’s never really over, over. But even when you start to think you’re at the end of the tunnel, you come out, only to realize there are many, many, many more tunnels to get through before you get to reclaim the life you had prior. Or as Nikki likes to say – you think you’ve summited Everest, only to realize you just hit another altitude-adjustment camp.

And so that leads me to present day. I am happy, I am grateful, I am positive, up-beat, I have a new found appreciation for my family and friends, and I have a whole metric fuck-ton of faith (Nikki :D), but at the same time, I am drained. I feel empty. A car, puttering into a gas station, 0 miles left on its range.

I look back at myself, for example, after I crashed my bike, and laughed about it. Sure, I was worried I did damage to myself, but ask my family – I was smiling. Sheepishly, maybe, but I was telling jokes and reassuring people, and laughing at myself. With a god damn 45 minute-long memory blank of a concussion.

I look at that guy, and I wonder – how was that me? How did I have that strength? I wonder if I’ll ever have that strength.

So I look at the bonfire of a personality that I was last year. I look at the strength with which I shed light, and I have to say, I feel myself diminished, overawed, and surprised. I feel how I feel today, and I feel beat up, broken down, washed up.

I am the glowing embers left over when you wake up after a night of camping.

Intellectually, I know that I will eventually get back to that bonfire. I know that I will get my personality, vitality, and attitude back. But right now, it feels like a physical impossibility.

I’m taking steps to take that feeling and kick it to the curb, but even 10 months post transplant, I have bad days. I get crippling migraines. I get nausea. My GI system is still pretty much on strike and is SUPER peeved at me. I have set backs. As anyone who has lifted or trained for an endurance race can tell you – you get accustomed to set backs. You don’t let them stop you. But man. I never expected myself to still be struggling quite so much so long after the transplant.

There are days where I wonder, if I went back to November 2012, knowing what I know now, if I might have just rolled the dice with continuing with chemo. I don’t regret my transplant, but man. I just don’t know anymore.

But eff it, right? What are we here for, if not to face our struggles and kick them in the face and ask for more? So, that being said, I signed up full tilt for a 30 mile bike ride around Manhattan for MS. You have my permission to call me crazy. I’ll wait.

Cancer doesn’t get to win.

I may not be able to complete the 30 miles without stopping. But I will average the requisite 10 miles an hour come hell or high water. And I’m doing so for a great cause, Bike for MS. Something I have privately derided celebrities for in my past is that when they or a loved one gets afflicted with a disease, THAT is when they become a champion for it. I often struggle with that in regards to what I want to do to try to help Leukemia and its related cancers. But, I never want to forget that cancer and leukemia aren’t the only horrible things out there. I read about MS and it brings me to tears, and I really think it is a disease that needs to find some better solutions than essentially “well…good luck!” (not to deride the strides and steps forward that research and doctors around the world have made in the last few decades). If you agree, I have a personal page set up here:

Currently, I’m riding with my friends Dylan and Zach, and we are riding for Team Eff Leukemia, because of COURSE we are. If you would like to join the ride, feel free to contact me and let me know, and I can fill you in with more details.

I’ll be writing up a separate, short post for this again when the time gets closer.

As for the rest, I continue to slowly get back to working. I’m slowly making my way back into the gym. And I am biking more and more. Managed 16 miles at 11mph last Saturday, and 13 at 10.9 on Tuesday.

Little by little, step by step, day by day, I have faith in the bonfire.

The fact you even recognize where you are emotionally and do so openly is a sign of your strength and fortitude. I think the very nature of this process is meant to break you down in as many pieces as possible … emotionally, physically, etc. Cancer tries to remove faith from the equation so you feel lost … but you held on. So no matter how crappy we feel … we’re still one step ahead of leukemia.

It isn’t easy, it won’t be easy and honestly … 5 years, 10 years, whatever. Living life based on an arbitrary timeline is insane. What if you relapse at 15 … weren’t you cured at 5? Pointless numbers and statistics will not infiltrate my life either … otherwise I would create a breeding ground of what ifs… and that’s the worst phrase in the English language. As always, you inspire me. Now go kick some butt! 🙂

two steps forward, one step back.. you’ll get back to feeling more like yourself in good time, but I feel like I can still see it in you, no matter how crappy you say you feel. I can hear it in your writing, in your expressions.. you ARE definitely a SURVIVOR.. I dont care what the dates say, but what you have battled, already, gives you hero status in my eyes.
And being a survivor, doesnt mean that you have to be strong ALL the time. It means that you HAVE been strong, and that you deserve a break!
I can’t imagine how hard it’s been recovering from the transplant, but truthfully, I feel you made the right decision, because you’re here, and you’re in remission. Of course, you still struggle, and it’s one long-ass, crappy road, but I know you’ll complete your recovery because you’ve already made it so far with such courage.
Can’t wait to hear more from you, I’m always so proud to be able to watch how you’ve handled everything so amazingly.

I am Jessica’s Sultaire’s Mom and I have been following your blog. Your intensity of courage and honesty has touched me greatly. I just want to say that I am so proud of you both…kindred spirits fighting the same fight …and moment by moment having a life that means so much.My thoughts are with you.

When I first read this I wasn’t able to respond because what do you say to your Nephew, Godson, Sister’s son when words sound so empty. Hate that your going through this, hate that your Mother, Dad, Sweet Lauren and Mason lived the nightmare daily with you. But you survived the worst treatment an individual will ever have to go through. You’ve set new Goals, your meds are decreasing , your Dr visit and blood tests are all positive signs that you will survive and we all look forward to celebrating with you in November.

We take everyday for granted until something like this hits a family. We always think it happens to The other guy. We have found out with everything that has happened within the family the last Three years we are the other guy.

I’ve learned time is short and because I’m a lot older than you time is really short! We all need to appreciate each day. Wake up in the morning and be glad for a new day, dont think about the next day. It’s what happens on that day that can change your life on a dime, as you’ve experienced. Maybe it’s something you have control over maybe not But it’s a new day – try to be positive, put a red rubber band on your right arm and if negative thoughts creep in snap it! We can only do so much to deal with issues we have, but I believe we all have a purpose life.

Follow your dreams may they all come true. Know that I think your pretty damn brave and strong. You faced a demon, made hard choices and for now everything points towards a better future. We only have Now, Make the most of everyday -it’s not an easy world but it’s all we’ve got. See as much of it as you can of it. Please keep this posting between us – Love you and think about you everyday. Aunt Marge XXX

Eff Leukemia posted: “There is an insidious hiding evil about “surviving” cancer (I’m still hesitant to call myself a survivor – I’m alive and in remission…but I still have 4 years and 3 months to go before I get to call myself cured). Leukemia and other blood cancers tend t”

I just have to say, even though I feel stupid for saying so after what you’ve been through, that I haven’t had the best past few years. But, because of you I didn’t give up. I feel so weak compared to the amount of strength you have had through this. It is completely inspiring, and I still feel better than I have my entire life despite what I’ve been going through. So, I just felt the need to congratulate you on your strength. If I was in the same situation, I don’t think I’d be as strong as you have been,